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Figuring Out What To Do – Part 2

What’s that line about the best laid plans of mice and men? Last July, I was thrilled to not have any more doctor’s appointments scheduled until November. Medical professionals are nice enough; I just don’t want to need their services. Instead I have had eight doctor appointments, five days in the hospital, an ultrasound, x-rays, two CTs, an MRCP, and, everyone was urging me to have surgery.

I had to figure out what to do. The main problem, in my view, was that I had gone to the hospital for one problem, but everyone wanted to treat a different, unrelated problem.

Gallstones I was familiar with. I made my no-surgery decision fifteen years ago and was not being given any reason to change that decision. Back then, I had three gallbladder attacks before the doctors figured out the problem; they recommended that I go under the knife. Instead, I started looking for more information. What caused the problem? Could it be prevented? Were there less drastic treatment options?

I learned that certain foods can be triggers. Avoid foods that cause a problem, and suddenly there is no problem. At least one doctor agrees:

most people can pretty well poke along with an asymptomatic gallbladder. Sporadic gallbladder attacks that respond to diet changes, and the presence of gallstones identified by sonogram, are not in themselves an indication for surgery. The pain can be brought under control with dietary modification, and the presence of the stones by itself doesn’t mean you need to have them taken out.

For many years that worked for me. I identified a trigger: chocolate. Eating chocolate made me wish – no exaggeration – that I were dead. The pain was dreadful. It only took a few months for me to learn that if I avoided it, I’d have no trouble with my gallbladder.

Then I discovered another, less dramatic, trigger: Gatorade. Now, I know that’s not on the usual list of foods that cause gallbladder attacks, but my gallbladder doesn’t read medical textbooks. When the weather is hot, I like Gatorade, and I’ve figured out that I can tolerate the occasional bottle if I also make sure to do the home-remedy for gallstones.

All that was in the past. Now, the gallstones that everyone was so concerned with were my fault for not being diligent. In early September we’d had a stretch of hot weather during which I drank a lot of Gatorade. Since I’d been very careful what I ate, I hadn’t had a gallbladder attack in years, thus foolishly didn’t bother to make sure that the Gatorade wasn’t causing problems with gallstones. Oops. Stupid, but I know how to deal with them. My decision had been carefully thought out, and would not change unless new facts came into play.

The reason I was in the hospital, and the thing that needed to be treated/managed (in my opinion) was the new diagnosis of pancreatitis. Since I got very little information from any of the hospital staff, I was glad to have my laptop and internet access to learn about this new diagnosis.

I learned that gallstones are one of the leading causes of acute pancreatitis. Perhaps the no-surgery decision I made fifteen years ago needed to be revised.

That was not the case. The GI people have pretty good credentials, and after extensive testing they were adamant that this was a very strange case in which the gallstones were not causing the pancreatitis.

Being pushed to have gallbladder surgery when that wasn’t the cause of my hospitalization was extremely frustrating. My reasoning was that if the two problems were separate, they should be treated separately. I could take care of the gallstones; they just needed to figure out what to do about the pancreatitis so we could prevent a recurrence.

Finally my gastroenterologist agreed to let me try home treatment for the gallstones. After that, additional imaging tests could be done to obtain proof as to whether or not the stones were gone. If they were gone, problem solved. If they weren’t gone, then I’d have the surgery. My rheumatologist concurred.

My family physician wasn’t as enthusiastic about the plan, but didn’t say why. Part of me speculated… was that because he knew it would really work? Was it because he figured it would be harder to talk me into the surgery once I felt better and went home? Was it because he had an idea what would really happen and wanted to prevent it? Who knows. Despite his misgivings, he discharged me from the hospital.

One little footnote you don’t often see in those home-remedy write-ups is that you ought to find out about the size of the stones before trying to pass them. I attempted to pass the gallstones as I’d done in the past. This time, however, I knew something was wrong.

I had a bad feeling that the scan would show I hadn’t gotten rid of all the stones, so repeated the home-treatment before going in for my follow-up imaging. I was right. The scan still showed gallstones. It also showed many in the ducts and a huge one stuck right where it would cause problems for the pancreas.

Surgery still didn’t seem like the best option. Like clearing an accident that’s blocking the freeway, I figured that if the stuck stone could be dislodged, then the remaining stones could be passed. Problem solved. That, however, would require the remaining stones to be small enough, and there was no guarantee that another one wouldn’t get stuck. Stuck stones are a problem.

All along, I’ve said that I wanted facts. The situation needed to be different if I were to change my mind about surgery. An additional fact in the radiologist’s report changed the situation. It was time to see a surgeon.

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7 thoughts on “Figuring Out What To Do – Part 2”

Perhaps your doc’s reluctance was that although gallbladder cancer is rare, it does occur and recurrent gallbladder stones/inflammation can be considered a risk factor. It occurs more commonly in women (something like 70% in some reports). It also has a very poor prognosis. Surgical resection is best treatment as chemo and radiation don’t add much to survival. I have a relative going through this right now, under supervision of Mayo doctors, but with co–morbidities that are complicating the attempted treatment further. I know from an incidental finding that I have “sludge” in the gallbladder. After this, I figure with my first or second attack, I will probably go ahead and let them take it out. I do understand your concerns though and your posting about them will put them in my mind later if needed, an other’s minds for this is a fairly commom problem.http://www.cancer.org/Cancer/GallbladderCancer/DetailedGuide/gallbladder-risk-factors

I just want you to know that you are in my prayers that this will resolve…be it through surgery or not. I can understand your reluctance on the surgery but sometimes we have to just do it if the facts support it. Please keep us posted if you can on what you decide and when the surgery may be.

Socks, praying for you. I hope you are finding an acceptable resolution. This has gone on for a very long time! I hope you have help with and from your family.
Though not ready to post about it, I am finding myself in the midst of a medical quandary, seeing several doctors and none in agreement yet.
Hope you are feeling better as soon as possible, with the best possible outcome.
Sherry

Thank you so much. The surgery is complete. The recovery is going well – the other day I finally left the house, and today I rode my horse. I was already in the saddle before I realized that this was outside the scope of anything covered in the surgeon’s instructions. I’m still facing a few challenges until I feel half-way normal again. Thanks for your prayers.